Volume 15, Issue 1 
February 2001


Sat. March 10, 1-3 PM Your Health Rights
Wed. April 4, 6-7 PM “Newcomer/Share Meeting”
Sat. May 12, 1-3 PM Dr. Herb Akers, Innate Chiropractor, Clinical Nutritionist and Applied Kinesiologist

Newcomer/Share Meetings are held at: Lyon Real Estate 1st floor Board Room at Lyon Village, 2580 Fair Oaks Blvd. Sacramento.

Group Meetings are held at: MedClinic, 3rd fl. conference room, 3160 Folsom Blvd. (at Alhambra), Sacramento.


We will have a speaker from the Health Rights Hotline at our next speaker meeting on March 10th. They are a totally independent, free health care information and assistance service here in Sacramento. They service El Dorado, Placer, Sacramento, and Yolo counties. Their goal is to “help health care consumers take charge of their health care and navigate the health care system more effectively.” They are available fur consultation on any problems you are having with receiving appropriate medical care, no matter what kind of insurance or non-insurance you are coping with. They will counsel you on how to get your rights and even advocate for you when needed. Their services are free to all consumers, and funded by independent sources.

The speaker will cover the kinds of services they offer and a general overview of your health rights as outlined by law and coverages. They will also be available to answer your questions pertaining to your own situation as best as is possible in this setting, so come prepared to ask questions! Come find out what you could or should be getting from your doctor or insurance, and how to go about it, or who to turn to for help! See you there!


At the January meeting, we showed a video of a talk given by Dr. Nancy Klimas in late 1999 on CFIDS and Fibromyalgia. It is a wonderful overview of the state of the art science as known then, which is not that outdated, given the givens. She is a front-runner for ideas and science trying to track down both the underlying factors which cause the illnesses as a well as a tireless researcher seeking ways to help her patients cope with the symptoms. The video was informative (a lot of information!!) and we all came away wishing she were our doctor, or at least available for our doctors to consult with. We lent the tape to the group which meets in the Carmichael area on Madison Ave. They showed the first half at their last meeting and will show the second half of the tape at their next meeting on Sunday March 4th @ 2pm. If you missed our last meeting, you can catch theirs. Call Mike Reilly for more information at 916-334-3643. (See box for details) The second half has most of the new information as well as her recommendations for symptom management and prescription protocols. Well worth your trouble if you can get there.

Don't forget our sharing meeting on the first Wednesday evenings of the other months. It is a good time to relax and share with others and get information "just between ourselves" and get support for your coping concerns. Bring your pillows and questions, and anyone who needs to bear from others with the illness, and come support your fellow members, too. We always find the group that gathers to be just what was needed for each of us. (That is a proper California perspective for you, but it's true!) Hope to see you there.

Also, if you know of someone you think would be a good speaker for the group, please call the hotline (916-484-3788) and leave their, or your, name and number. We are always looking for how to serve you with the information you need to negotiate this difficult time. Thanks!

Scott Hensley
Wall Street Journal, Technology & Health, 9/19/00

Toronto - Viruses that insidiously damage heart muscle may be the cause of chronic fatigue syndrome, a mysterious malady that many physicians have written off as a psychological condition, according to a provocative new study by an infectious disease expert.

At a major scientific conference here, Martin Lerner, a doctor at William Beaumont hospital in Royal Oak, Mich., presented data on a series of patients, including himself, who developed the debilitating condition and were later treated, with apparent success, with potent antiviral drug regimens.

"It is an infectious disease," that primarily attacks the heart, Dr. Lerner declared at a meeting of the American Society of Microbiology. Dr. Lerner said daylong cardiac monitoring found that 95% of chronic-fatigue patients he and his research team tested in two separate small studies had abnormal electrocardiograms indicative of heart damage.

Dr. Lerner said he suspects the heart damage is caused by Epstein-Barr virus and cytomegalovirus, both long implication in the condition. The damage to the heart occurred, he believes, when the viruses were held in partial check by the patient's immune systems. Though the immune systems appear to have kept the viruses from reproducing, Dr. Lerner said partial bits of the viruses that were being produced appear to be causing heart damage.

Raymond Swarts, an infectious-disease specialist unconnected to Dr. Lerner's group, called the findings "fantastic and very compelling." Dr. Swarts, who practices medicine in Reno, Nev., cautions that more studies are necessary.

A test for the hard-to-diagnose syndrome would represent a significant clinical advance. Chronic-fatigue syndrome now is diagnosed by a rough checklist of symptoms and a process of elimination. The key clinical finding is that patients have persistent or relapsing fatigue for six months or more.

In fact, doctors have argued whether the syndrome is a disease at all and even if it is, exactly how prevalent it might be. By some estimates, the syndrome affects about six in every 100,000 people.

After implicating viruses as the cause of the syndrome, Dr. Lerner tested possible treatments. Many of the patients, including Dr. Lerner who were infected by Epstein-Barr virus regained cardiac function and returned to normal life after taking high doses of valacyclovir (brand name Valtrex), an antiviral drug made by Glaxo Wellcome PLC, for several months. Patients with cytomegalovirus received ganciclovir (Cytovene), another antiviral drug made by Roche Holding AG.

Dr. Lerner became interested in chronic-fatigue syndrome when he fell ill in 1988 at age 58. He thought at first that he had heart disease, and an examination by doctors confirmed that his heart was weak. Later, he suspected there was more to the picture. In 1996, he began antiviral drug therapy and his heart function returned to normal. The smoking gun in Dr. Lerner's investigation came from patient samples of heart tissue. The viruses had weakened their hearts by scrambling the normally well-ordered muscle fibers. Glaxo Wellcome is funding a trial of antiviral treatments for chronic fatigue syndrome, that just got under way, said Robert Deeter, an antiviral clinical specialist with the drug company. Dr. Lerner holds patents to diagnose chronic-fatigue syndrome with cardiac monitors and to treat the condition with antiviral agents. He has another patent pending for the use of immunological agents to diagnose the condition.


Reproduced by Support Group Article, January 2001, with permission from the New Year 2000 issue of InterAction, the magazine of the UK Charity Action for M.E.

We already know that there is no one test for ME; that it is a diagnosis of exclusion, but what if your doctor has overlooked another cause for your symptoms? When you consider that marked fatigue is the central symptom of virtually every chronic illness, and that researchers are still struggling to understand what actually causes ME, you realize the importance of making absolutely sure that the diagnosis is right.

Misdiagnosed - some case examples For 15 years Ruth struggled with symptoms of exhaustion, which her doctors diagnosed as CFS, until finally, desperately ill, she received a correct diagnosis of underactive thyroid (despite having been told she had 'normal' lab test results). Since treatment with a 'natural' armour thyroid extract she reports 'I'm thriving ... mastering Tai Chi with great relish, have started art classes and do practically all the shopping and cooking.'

Orla was misdiagnosed with ME for two years and then 'in the space of three weeks I was cured.' Orla had traveled extensively in Asia and as she says: I given my history of travel, it was a grave omission that I was not checked for parasites.' Ill with symptoms of gastric disturbance, poor memory, fatigue and weakness, she fulfilled most of the criteria for a diagnosis of CFS. In fact, lab examination of her stools showed that she had been infected by Entamoeba Histolytica - the same amoeba that causes amoebic dysentery. After drug treatment including a 10-day course of Flagyl she made a dramatic improvement.

Susan experienced years of ME symptoms before discovering accidentally that her headaches, joint and muscle pain, muscle and nerve exhaustion and post-  exertional malaise were completely eliminated by long courses of 500 mgs of Ciproxin twice daily. This drug is an antibiotic and the fact that it helped Susan so dramatically suggests that her problems were possibly caused by an ongoing bacterial infection rather than 'true' CFS. Infections, which it may be worth excluding, can include helicobacter pylon (which causes stomach ulcers), mycoplasmas, brucellosis, Giardia (especially if you've traveled abroad), Lyme disease, parvovirus B 19 and toxoplasmosis. While some conditions, such as anemia, can be easily tested for on NHS, others remain harder to detect. Silicon breast implants can also leak and poison the body, causing one type of chronic fatigue syndrome, and are no longer used in the United States.

Justification for Further Tests In her book Chronic Fatigue Syndrome, Gill Jacobs noted that a study in Dundee found that one-third of patients who had been diagnosed by their doctor as having CFS were shown to have other medical conditions afar more thorough clinical and lab tests were finally carried out.

Clues that may point to an underlying cause for your illness can be picked up from your symptom pattern and illness history. Judy Rogers from Ohio writes: 'Once a doctor hears CFS that's it all serious assessment of symptoms stops. Five neurologists all diagnosed me with CFS, but after eleven years of suffering, I finally persuaded a neurosurgeon to do an MRI scan, which showed three ruptured disks in my neck, one of which was pressing on my spinal cord. Now I remember that three months before getting sick, I was in a car accident and had whiplash. This diagnosis doesn't mean that I don't have CFS, just that this wasn't the full story, and that, given my symptoms and pain, further investigations were justified a long time ago.'

Symptoms that may require further investigation include the following.  Gastro-intestinal symptoms: bloating, constipation, diarrhea and excessive wind may be indicative of parasites and flingal problems such as Candida (yeast overgrowth) and may indicate irritable bowel, celiac disease (gluten intolerance) or Crohn's disease. Food allergy and intolerance produces all of the above symptoms and if you suspect this may underlie your chronic fatigue, do consider an elimination diet. For all these symptoms ask for referral to a specialist and tests for bacterial or parasitic infection. For further information, contact the National Candida Society at PO Box 15 1, Orpington, Kent BR5 1UJ, United Kingdom. Their website is Breathing problems including breathlessness and swelling of the ankles and legs are all symptoms that could signify heart disease and need to be attended to immediately by your OP. Alternatively, hyperventilation, or over-breathing, can cause fatigue, lightheadedness, tingling and tightness in the chest. o Muscle wasting - this is not usually present in CFS and only occurs due to long periods of immobility. Pain, weakness, twitching are all seen in ME but when muscle wasting occurs or temporary paralysis, it may be worth discussing a referral to a muscle specialist to exclude disorders such as myasthenia gravis and multiple sclerosis. o Joint pains - these can be part of CFS (or indeed arthritis) but when seen with dryness in the mouth or eyes they may suggest Sjogren's syndrome - an immune system disorder which causes widespread inflammation in various body tissues particularly the joints and glands. Julia was misdiagnosed with CFS for two years, before her dry eyes and mouth and painful joints led a rheumatologist to diagnose Sjorgen's, which is now being treated successfully with Malaria pills (hydroxychloroquine, also used to treat lupus). Depression - severe mood swings can be related to ME, but still need treating in their own right. However, when feelings of unworthiness and guilt along with other symptoms of poor sex drive and lack of motivation are seen together as primary symptoms, they may suggest a major depressive disorder (MDD) rather than ME. One of the ways to differentiate between an MDD and CFS is that the former is helped by aerobic exercise and by anti-depressants whereas these measures do not usually help the physical symptoms of ME, and make many sufferers worse. Research shows that CFS and MDD cause different neurotransmitter problems in the brain and this suggests that these are two different disease processes. Sleep disturbance (if seen as a primary symptom) - although this is common in ME, if you have lucid vivid dreams, hallucinations and daytime sleepiness, it may be worth excluding the rare condition of narcolepsy. Sleep disorders alone can lead to chronic fatigue and need treating in their own right.

Other conditions, which may cause ME-type symptoms, are listed below.  Carbon monoxide poisoning, often from a leaky boiler or gas stove in the home clues would be feeling better outside the home or with windows open, or when your heating is off. Faulty boilers are potentially fatal, so if in doubt, call the Gas Company to check yours out. Anne Greenwood was diagnosed with CFS in 1994, and was deteriorating steadily, with dizziness, numbness, asthma, extreme weakness and constant attacks of flu. Then, in 1997, the 11th annual check on her boiler disclosed a longstanding leak of carbon monoxide and nitrogen dioxide. Since having the boiler replaced, Anne's asthma and nausea have improved and her headaches have cleared up, but she has been told that the damage to her brain is irreversible. Carbon monoxide can be tested for by a doctor, but only stays in the system for 4 1/2 hours after exposure, The best way to check your home is with a sensitive carbon monoxide detector. Blood sugar problems Do you feel exhausted, lightheaded and giddy a couple of hours after eating? These symptoms could indicate low blood sugar, or even diabetes, rather than CFS. See your GP or a nutritionist to test blood sugar levels, and aim to eat little and often, avoiding sugary foods. Low blood pressure can also cause chronic fatigue and fainting, in particular neurally medicated hypotension (where your blood pressure drops on standing). Hormonal imbalances The menopause, for example, includes symptoms of fatigue, mood swings, depression and sweating - all of which may be confused with mild CFS. If you suspect you may be menopausal ask your GP for a blood test of hormone levels. Endocrinal imbalances that could be misdiagnosed as CFS include underactive thyroid (probably the most common misdiagnosis - it's crucial that both T4 and TSH levels are measured by the GP) and weak adrenal glands, (blood tests of cortisol levels should ideally be taken by your doctor morning and evening). Fibromyalgia (FMS) - This condition is characterized by well defined tender spots in muscles and ligaments with pain and sleep disturbance more prominent than chronic fatigue. Often ME has an acute onset associated with infection, whereas FMS usually follows a trauma, such as an accident or surgery. If you are experiencing these severe tender spots you could ask your GP to refer you to a pain specialist or rheumatologist for a second opinion.

Secondary Conditions Sometimes, even though a correct diagnosis of ME has been given, a secondary condition arises that requires separate treatment.

Jennifer had ME for several years, but one day new symptoms of severe head pains started to occur. When she went to the ER of her local hospital they sent her home, without doing any tests, once they heard she had ME. When she was finally admitted a few days later, a blood clot in her brain had caused paralysis, blindness and deafliess. With treatment Jennifer got back her movement and hearing but will be partially sighted for the rest of her life.

The moral of this tale is that new symptoms must always be investigated in their own right rather than dismissed as simply further evidence of CFS.

Keep Looking The list above is not exhaustive and nor should it be seen as a 'shopping list' to take to your doctor, but rather as food for thought. As we have seen, lab tests and a careful examination of the patient's full history and symptom pattern should help your doctors to rule out other conditions. Ruth, Orla and many others have been misdiagnosed with ME when in fact they had other, treatable conditions. As a result, years of their lives have been wasted with unnecessary suffering.

Judy concludes: 'the moral of the story is clear. Go on reading about this illness. If you think you should see a specialist, insist on doing so. You may have to pay for a consultation to see the person you want, but somewhere there is a doctor specializing in exactly your condition.'


Medicare recipients can now use any California pharmacy that accepts Medi-Cal and receive prescriptions at the Medi-Cal rate plus a 15 cent processing fee for each prescription. This represents a potentially major savings from retail prescription prices. The new program went into effect on February 1, 2000. 

Last October Governor Gray Davis signed into law Senate Bill 393, (authored by Senator Jackie Speier). The new law enables Medicare recipients to obtain their prescription drugs at a cost no higher than Medi-Cal rates.

Anyone with a Medicare Card is eligible to participate. This includes seniors over age 65 and those under age 65 who are disabled and have a Medicare card.

How does the program work? o Just take your prescription to any California pharmacy that accepts Medi-Cal. o Present the prescription and your Medicare card. You do not have to be a Medi-Cal recipient. o You will pay the Medi-Cal prescription price plus a 15 cent processing fee for each prescription. Medi-Cal will not pay for the prescription. You are still responsible for paying the prescription cost and 15 cent processing fee. o There are no forms to fill out; your Medicare card is proof of your eligibility.

For more information, visit the Governor's web site at and search for 
Senate Bill 393 dated February 1, 2000

 by Sarah Myhill, M.D.

11/14/2000 - SJ CFIDS/ME/FMS Support Network, Snail Mail (Jan., Feb., Mar., 2001) Editor's Note: Sarah Myhill, MD., is a British doctor working both for the National Health Service and with a private practice. About 10% of her NHS patients suffer from CFS and approximately 70% in her private practice have it. Dr. Myhill is a medical advisor to Action for ME, a national support organization in the UK for ME/CFS sufferers, She is also the Honorary Secretary of the British Society for Allergy Environmental and Nutritional Medicine. Dr. Myhill has written extensively about CFS over the years, covering all aspects of the disease from diagnosis to causal theories to treatments. This excerpt is adapted from her book 'Diagnosing and Treating Chronic Fatigue Syndrome,' and is used with permission of the author.

Treating Magnesium Deficiency Magnesium deficiency is the most difficult deficiency to correct. In evolutionary terms, magnesium was abundant in the diet and therefore no good mechanisms to conserve magnesium evolved. It appears to be poorly absorbed and easily excreted even by so- called normal people (and I don't think there are many of those left!).

Magnesium is necessary for the normal function of over 300 enzyme systems, for muscle relaxation, immune function, cardiac function, clotting, nerve conduction etc. Indeed I cannot think of a bodily department in which magnesium is not essential. It prevents heart disease, cancer, blood pressure, kidney stones and improves energy, sleep etc.

I can guarantee to get magnesium levels up by using injections. One injection of 2mls of 50% magnesium sulfate (1gm MgSO4, or 100mgs elemental Mg or 4 millimols) will usually keep levels up for two weeks (however, some people need them more often). By the third week, levels will usually have fallen again. For some people this is the only method that has worked, but it is tedious to have to keep injecting. It astonishes me that so small a dose of magnesium works as 100mgs is only one third of the RDA (recommended daily allowance).

There are other interventions to improve magnesium levels and some work for some people. It is impossible to predict which will work for everyone but all are worth trying.

What is Sufficient Magnesium? Are you taking enough magnesium in the diet? The recommended daily allowance is 300mgs for men, 350mgs for women. Magnesium is extremely safe by mouth - too much simply causes diarrhea. I have yet to see a red cell magnesium which is too high. However, it is theoretically possible in people with kidney failure.

The richest source of magnesium in the diet is from chocolate (yippee, but care with the sugar!), nuts, green vegetables, whole grains and seeds. Use a magnesium rich salt such as Solo. Use a bottled water rich in magnesium. Hard water also contains more magnesium than soft water. Most processed foods are low in magnesium.

Can magnesium be supplemented? Yes, of course. Too much magnesium can cause diarrhea in which case your magnesium levels will fall. I am cautious about using minerals in isolation, because too much of one can induce deficiencies in others. So I start off with a mineral complex daily (each capsule of the brand I use contains 9omgs of magnesium). If this does not do the trick, add in other magnesium salts 

such as Epsom salts (1/4 to 1/2 teaspoon daily - too much gives diarrhea), magnesium citrate, chelated magnesium, magnesium EAP. etc.

Try Epsom salts in the bath because minerals can be absorbed through the skin. I do not know exactly how much to use, but I suggest a handful or two.

Is Magnesium's Absorption Blocked? Calcium and magnesium compete for absorption and so too much calcium in the diet will block magnesium absorption. Our physiological requirements for calcium to magnesium is about 2:1. In dairy products the ratio is 10:1. So, consuming a lot of dairy products will induce a magnesium deficiency.

Tea contains tannin which binds up and chelates all minerals including magnesium. If tea is to be drunk, don't have it with food. Incidentally, tea drinking is the commonest cause of iron deficiency anaemia in UK for this same reason.

Vitamin D is necessary for the body to utilize magnesium. The major sources of vitamin D are dairy products, sunshine on the skin, and seafoods (at least 3 servings a week).

Are You a Magnesium Loser? All diuretics will make you lose magnesium through urination. By this I do not just mean drugs, but also tea, coffee and alcohol. Even some herbal teas are mildly diuretic.

Hyperventilation makes you lose magnesium in the urine. This is because hyperventilation induces a respiratory alkalosis, the body excretes out bicarbonate to compensate, but each bicarbonate is negatively charged and carries a positively charged cation (charged ion) with it - in this case magnesium.

Heavy exercise also makes you lose magnesium in the urine. This should not be a problem for CFS patients but does explain why long distance runners may suddenly drop dead with heart arrhythmias.

Magnesium is lost at times of stress. This also includes food allergy reactions and detoxification.

Can You Hang on to Magnesium? For magnesium to get into cells it requires thiamin (vitamin B1). Try thiamin l00mgs daily - if you are already taking some in a multivitamin preparation, then take the B 1 at 100mg a day. For magnesium to be retained inside cells you need good antioxidant status. Selenium is the main mineral antioxidant. Food tables are unreliable because food content is dependent on soil levels of selenium. Assuming good soil levels, (which is a big assumption), foods rich in selenium include wholegrains, organ meats, butter, garlic and onion. Seafoods are rich in selenium and obviously not dependent on soil levels.

Boron is necessary for normal calcium and magnesium metabolism. I also find boron very useful for arthritis, perhaps because of its effect on calcium and magnesium. For arthritis you need 9mgs a day for 3 months, then reduce to a maintenance dose of 3- 6mgs daily.

At present the only way I know how to ascertain whether or not magnesium levels are replete is to measure a red cell magnesium.

Magnesium by Injection Parenteral magnesium is often used as part of the treatment of myalgic encephalitis (ME). It can have many effects but the main ones are to improve energy, muscle aches, cold hands and feet and help hyperventilation. It seems to have a different effect from oral magnesium and, even in the presence of a normal red cell magnesium, can bring benefits. However, it is usually given to those patients who are deficient. A red cell magnesium (test) is a reasonable test of levels. A serum magnesium (test) is an unhelpful test since the heart stops if these levels fall. Therefore serum magnesium is maintained at the expense of body stores. Unfortunately 4 most hospital laboratories only measure serum levels - usually in intensive care medicine.

Magnesium sulphate is available on prescription, (in the UK). The usual regime is 1 gm/2mls given intramuscularly, weekly for 10 weeks. About 70% of patients will see useful improvement. After this time about 50% of those who have improved will need a top-up dose every 1-4 weeks depending on clinical response. 1gm of 50% contains 100mgs of elemental magnesium. Some of my patients have received over 50 injections. Since the RDA (recommended daily allowance) for magnesium is 300mgs, it is almost impossible to overdose. A possible risk may be to a patient in advanced renal failure, who cannot excrete magnesium and may already have high levels. 

The injection is painful because one is injecting a concentrated solution. It is best given at room temperature or blood heat, intramuscularly, either into triceps or deltoid, slowly over one to two minutes. I usually use an orange needle, at least I" long to get deep into the muscle. Magnesium is a powerful vasodilator. Even if one takes care to check the tip of the needle is not in a vein, sometimes there is such a powerful local vasodilatation that the vessels open up and an i.v. injection is inadvertently given. This does not matter much, except that the patient develops a generalised vasodilatation, feels hot and alarmed, goes red and may faint (if upright).

In fact it is partly this effect which is taken advantage of in the treatment of acute myocardial infarction or acute stroke. in both these conditions there is a local obstruction of blood supply. I use i.v. magnesium (2-Smls of 50%) as a bolus to treat both these conditions - often with dramatic effects. With acute myocardial infarctions there is often immediate pain relief as either the obstruction is relieved or good collateral circulation restored. Furthermore, magnesium is antiarrhythmic. Trials with magnesium have clearly demonstrated benefit and magnesium is used as a front line drug in many hospitals. In acute stroke, function can be restored within a few minutes - most satisfying. However, if there is a possibility that the stroke is haemorrhagic (about 15% of cases) then magnesium should not be used.

I have recently discovered that for magnesium to get into cells thiamine is required. Some patients can correct levels by taking thiamine l00mgs day.

Magnesium Per Rectum Giving magnesium by injection is the quickest way of restoring normal blood and tissue levels of magnesium. However for some patients the injections, while giving benefit, are too painful to be considered long term.

At a recent conference in Australia, I spoke to a doctor who had been trying magnesium sulphate given PR (per rectum - like a suppository) with some success. If this technique works, then it would be a cheap, safe, do-it-yourself at home technique, which could replace uncomfortable injections. With this in mind, Dr Keith Eaton made up some kits for my patients (and his) to try. I have now tried magnesium PR with 10 patients and it has been as effective as the injections in six of them. If the magnesium is being absorbed then I would expect patients to get the same response as from a magnesium injection, but of course without the pain. It does work for a useful proportion of CFS patients, so it is well worth trying if you get benefit from the magnesium injections.

Magnesium by Mouth Magnesium is poorly absorbed by mouth. That is why I start off with injections. By injecting magnesium I can guarantee 100% to bring the levels up. I cannot guarantee to do this with either PR or oral magnesium. However if the injections do help then it is well worth trying oral or PR if only to reduce the pain and trouble of injections.

All magnesium salts can cause diarrhea if too much are taken. The cheapest source of magnesium is Epsom salts. The key is to take "sub-diarrheal" doses. I suggest a quarter teaspoon daily, building up slowly until you get "the trots", then reduce just enough to give a normal bowel movement. It does taste awful - try with fruit juice.


New research using twins may point to a genetic predisposition to CFS and FM.

Both identical and fraternal female twins were examined at the University of Washington. In Phase One of a two-phase study, several interesting results were found.

Out of 51 sets of female identical twins, nearly one quarter of both twins (22%) reported having CFS. There was a much lower incidence in the fraternal twins. Of the 22 sets of fraternal twins studied, only 5% reported having CFS.

The statistical variance remained similar when comparing for fibromyalgia. Out of 74 sets of female identical twins, 34% of both twins had FM. In 23 sets of fraternal twins, only 4% of both had FM.

In addition, researchers found that the twins with CFS appeared to be more depressed and anxious than their healthy counterparts. Differences in brain scans also were examined. Twins with CFS had different patterns primarily in the frontal and temporal cortical regions in SPECT imaging.

No significant differences were found in the frequency of viral infections, and natural killer cell activity was similar in both those with and without CFS analysis of white blood cell subsets showed that the twins with CFS did seem to have a lower number of immunologically 'experienced or "memory" cells than their healthy twin. Twins with CFS were noted to have less persistent activation of the T lymphocytes.

Researchers used information from completed comprehensive Registry Booklets, psychiatric interviews and medical records to evaluate over 400 sets of twins for Phase I of the study. Participants were evaluated using continuous measurement and recording of physiological activity during sleep, exercise capacity testing, neuropsychological assessment, psychiatric and life events interviews, and tests of viral replication and the immune system. In addition, patients' regional cerebral blood flow was measured with SPECT imaging.

According to Dr. Dedra Buchwald, lead researcher and University of Washington associate professor of medicine, CFS/FM and healthy twins are being used because the researchers have the unique opportunity to adjust for inherited and environmental factors such as exposures and early life experiences.

Further testing will be conducted in Phase 2 of the twins' study to confirm Phase I results. In addition, researchers at the University of Washington will compare their CFSIFM-healthy twin results to results gained from testing healthy-healthy twins and try to determine how much of a role a patient's perception plays in CFS/FM. News On Chronic Fatigue and Immune Dysfunction Syndrome and Fibromyalgia, Volume VIV, No.4 (Fall 2000)


Research on chronic fatigue syndrome (CFS) presented by Dr. Martin Lerner at the American Society of Microbiology meeting in Toronto in September has received considerable media attention. Lerner, an infectious disease specialist and clinical professor at Wayne State University School of Medicine in Detroit, believes that the cause of CFS is a continuing or reactivated cardiac infection by Epstein-Barr virus (EBV) and cytomegalovirus (CMV).

Lerner has been exploring possible associations between CFS and viral myocarditis since 1988 when he became Ill with CFS. He hypothesizes that damage to the heart muscle can cause CFS symptoms in a subset of patients, and that, it can be treated with antiviral drugs.

Data from two new studies Lerner presented at the September meeting showed that 95% of CFS patients tested by holter monitoring had abnormal electrocardiograms (ECGs), including oscillating or flat/inverted T waves. Approximately 25% of healthy subjects had abnormal ECGs. Right ventricular endomyocardial biopsies performed on the CFS patients showed microfiber disarray, hypertrophy and mild fibrosis.

According to Lerner, 10 of the CFS patients who tested positive for EBV but not CMV and had been ill for less than 2 years improved when given Intravenous and oral valacyclovir for 6 months. Nine patients with co-infections (EBV-CMV) who received valacyclovir did not improve. None of the patients treated received a placebo. Glaxo-Wellcome is currently conducting a trial of valacyclovir vs. placebo, for the therapy of CFS in patients with evidence of T-wave abnormalities.

Clinicians should keep in mind that the studies presented by Lerner were performed on a small number of patients. In addition, the cardiac abnormalities are described as mild and showed up in a high percentage of the controls. THE CFS RESEARCH REVIEW (Fall 2000)


Please be sure to visit the CCCA web site at for links to CFIDS related websites. Please feel free to email us at with any questions, comments, suggestions, or interesting link information. A source of additional information on the web is The CFIDS Association of America, Inc. at Note: Is it time to renew? Your membership expiration date can be found on the mailing label after your name! 

[The following is from The Carousel Network -- Editor]

Neurocognitive Impairment in CFS
 By John Deluca, PhD, UMDNJ-New Jersey 

Studies assessing structural and functional neuroimaging, autonomic activity and neuroendocrine abnormalities all point to neuropathology in chronic fatigue syndrome (CFS) patients. While the nature and the extent of neuropathologic involvement in CFS is still unclear, neurocognitive studies make up a very large body of CFS research. This is an important area for clinicians to familiarize themselves with, as cognitive problems have been cited as one of the most disruptive and functionally disabling symptoms of CFS, with up to 85% of patients reporting impairments in attention, concentration and memory abilities. [1] This article provides an overview of neurocognitive findings in CFS patients and the possible underlying structural changes in the brain.

Cognitive problems observed Neuropsychological testing confirms cognitive abnormalities, although the data is not consistent as to their nature and testing abnormalities may be subtle in Attention contrast to patients' descriptions of day-to- day problems. Several formal neuropsychological Visual memory studies report impairments in attention, Reaction time verbal memory, visual memory, reaction time and complex auditory information processing processing. [2-5] However, others have not found memory or attentional deficits. [6-7] Despite methodology limitations, research with CFS patients is fairly consistent in showing that neuropsychological impairments are primarily in the area of complex information processing. Whether the complaints of difficulties in learning and memory result from slowed information processing efficiency, verbal processing difficulties or susceptibility to interference are important questions that were addressed in a recent addressed in a recent study. Patients were found to be susceptible to brief distraction, which resulted in impaired immediate and delayed recall. [8] Another important question for neuropsychological research in CFS is the relationship between self-reported fatigue, perceived cognitive impairment, and objective neuropsychological performance. Some research findings have demonstrated that fatigue brought about by mental challenges did not universally impair performance. A study at the NIH-funded New Jersey Cooperative Research Center found that after exhaustive treadmill exercise, CFS patients demonstrated impaired cognitive processing compared to healthy controls, suggesting that physical fatigue may be a crucial variable in explaining impaired cognition. [9] Several other studies have arrived at similar conclusions. It is important to note that the impaired cognition experienced by many CFS patients may not necessarily be explained by an underlying psychiatric condition. In at least one study, CFS patients without psychiatric comorbidity were impaired relative to controls and patients without CFS with concurrent psychiatric disease on tests of memory, attention and information processing. [10]

Neuroimaging study findings It has been postulated that some of the symptoms of CFS, such as impaired cognition, may result from brain abnormalities. Several studies have reported significantly more abnormalities on MRI among CFS subjects relative to controls. Overall, MRI studies are generally consistent in demonstrating T2 signal hyperintensities in the subcortical white matter, often in the frontal lobes. One study found that CFS patients without depression had a significantly lamer number of small, punctate subcortical white matter hyperintensities compared to CFS patents with depression or sedentary controls. [11] Another approach to neuroimaging information is assessing cerebral blood flow via single-photon emission computed tomography (SPECT). Most SPECT studies have shown significantly decreased blood flow. interference This technique has demonstrated changes in some patients' brains that were not apparent on MRI. In one study, decreases in regional cerebral blood flow throughout the brain have been reported on SPECT in a CFS group relative to healthy controls, and abnormalities were observed in 80% of the CFS patients. CFS patients could be distinguished from controls with unipolar depression based on the pattern of SPECT abnormalities. [12] In addition, significant brain stem hypoperfusion on SPECT was found in patients with CFS relative to controls and depressed patients. [13] At least one research group reported a positive correlation between frontal blood flow (on SPECT) and cognitive impairment. They hypothesized that the blood flow abnormalities may play a pathophysiological role in cognitive impairment end physical activity limitations in CFS patients. [14] There have been few published reports of positron emission tomography (PET) scans in CFS patients. One research group reported hypometabolism on PET in the brain stem of 18 CFS patients, which was not found in six depression patients or six healthy controls. [15] 

How does CFS differ from depression?  CFS symptoms rely on subjective report, which fuels the controversy over an organic versus emotional etiology of the illness. Some practitioners confuse clinical depression, which may also cause difficulty in cognitive processing, with CFS. High diagnosis rates of depression in CFS patients may result from overlapping symptomatology, reaction to disability Imposed by fatigue or viral/immune changes in the brain. However, as has already been pointed out, studies have shown that some of the brain abnormalities found in CFS may be differentiated from patients who are psychiatrically depressed. However, this research is in its infancy, and more studies are needed. In addition, one recent study showed that the pattern of depressive symptoms in CFS patients is dissimilar to that observed in clinically depressed patients and more closely resembles the pattern observed in patients with multiple sclerosis (MS). [16]

Implications for treatment 

Much of the data on brain abnormalities In CFS is still too preliminary to use in practice. Although the MRI and SPECT findings of the brain in CFS patients are intriguing, more carefully designed and controlled studies still need to be undertaken. However, physicians and other health care professionals could still make use of the information that neuroimaging provides. Some patients with apparent CFS and brain lesions on MRI may actually have mild presentation of other neurologic illnesses, such as MS. Clinicians should also keep In mind that patients' diminished neurocognitive processing can be addressed through rehabilitation. Clinicians should also take patients' impaired cognition into account during office visits. Patients may need assistance in completing complex tasks, such as filling out medical forms. They may also have difficulty expressing themselves verbally and understanding questions during exams. One way to help patients is to make questions very specific and to state them one at a time, rather than as an uninterrupted series, since slowed processing speed is a major problem in patients with CFS.


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Dr DeLuca is Director of Neuroscience Research, Kessler Medical Rehabilitation and Education Corporation, and Professor of Physical Medicine, Rehabilitation and Neurosciences, University of Medicine and Dentistry of New Jersey (UMDNJ)-New Jersey Medical School.

This article appeared in THE CFS RESEARCH REVIEW, Summer 2000 Volume 1 Issue 3. The CFIDS Association of America does not endorse products or services, and the ideas expressed belong strictly to the authors, not the Association or The CFS Research Review. The Association and The CFS Research Review assume no liability for any medical treatment or other activity undertaken by readers.

o Copyright 2000 by The CFIDS Association of America, P0 Box 220398, Charlotte, NC 28222 - Telephone: 704-365-2343.